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Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review

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  • Juyeon Oh
  • Jung A Kim

Abstract

Aims and objectives To identify the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, categorise and summarise them into a Supportive Care Needs Framework and identify gaps in literature. Background Little is known about the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, and this subject has not previously been systemically reviewed. Design Scoping review. Methods We conducted a scoping review from the MEDLINE, EMBASE, CINAHL and Cochrane databases for the period January 2000–July 2016, using the following inclusion criteria: (i) written in English only, (ii) published in peer‐reviewed journals, (iii) at least part of the research considered the supportive care needs perspective of amyotrophic lateral sclerosis/motor neuron disease patients or their caregivers and (iv) the population sample included patients of amyotrophic lateral sclerosis/motor neuron disease or their caregivers. Results Thirty‐seven articles were included. Our review shows that amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers’ supportive care needs were mentioned across all seven domains of the Supportive Care Needs Framework. Most common were practical needs (n = 24), followed by Informational needs (n = 19), Social needs (n = 18), Psychological needs (n = 16), Physical needs (n = 15), Emotional needs (n = 13) and Spiritual needs (n = 8). Conclusion From the perspectives of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, there is a significant need for more practical, social, informational, psychological, physical, emotional and spiritual support. Relevance to clinical practice The Supportive Care Needs Framework has potential utility in the development of patient‐centred support services or healthcare policies and serves as an important base for further studies; especially, specific examples of each supportive care needs domain can guide in clinical settings when healthcare professionals provide multidisciplinary care to amyotrophic lateral sclerosis/motor neuron disease patients and individualised care.

Suggested Citation

  • Juyeon Oh & Jung A Kim, 2017. "Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: A scoping review," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(23-24), pages 4129-4152, December.
    • Handle: RePEc:wly:jocnur:v:26:y:2017:i:23-24:p:4129-4152
    DOI: 10.1111/jocn.13945
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    References listed on IDEAS

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    1. Henschke, Cornelia, 2012. "Provision and financing of assistive technology devices in Germany: A bureaucratic odyssey? The case of amyotrophic lateral sclerosis and Duchenne muscular dystrophy," Health Policy, Elsevier, vol. 105(2), pages 176-184.
    2. Hirano, Yuko Mandai & Yamazaki, Yoshihiko & Shimizu, Junichi & Togari, Taisuke & Bryce, Thomas James, 2006. "Ventilator dependence and expressions of need: A study of patients with amyotrophic lateral sclerosis in Japan," Social Science & Medicine, Elsevier, vol. 62(6), pages 1403-1413, March.
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